Obamacare’s Silent Constituency

In the end, as so often, it all came down to one person. In this case Chief Justice John Roberts. He sided with the liberals enough to save the basic provisions of the Affordable Care Act.

In the tumult the wailing and the sighing, the gentlest of gentle sighs, inaudible to all but those who know, comes from the permanently sick, just-alive people who suffer from the immune system disease known as Chronic Fatigue Syndrome, called Myalgic Encephalomyelitis in much of the world. This is a disease little understood and under-researched, which it is believed afflicts 1 million Americans.

It is a disease that has no mercy. It is almost without exception a life sentence, robbing the victim of normalcy. Its symptoms include total collapse after exertion, especially after exercise; sleep that does not refresh; periods of months or years of being bedridden with pain from bones “that feel as though they are exploding,” according one victim, Lynda Haight; and a mental fog that makes the simplest task, like paying bills, too difficult many days. Other symptoms include extreme sensitivity to light, noise and normal city and suburban noise.

To this community of the lost, this cohort of hopelessness, Obamacare is a blessing; a small blessing but one that may grow in time when a cure is found, or at least when a therapy which relieves the suffering is developed.

These are the very people — sick, voiceless and hidden in in plain view – who have been shunned by insurance companies.

Those patients who contracted the disease in childhood have never been able to get insurance. They are the quintessential preexisting condition demographic. No room at Hippocrates Inn for them, even if they can afford it. Others have been dropped when they reach lifetime limits embedded in many policies.

Sadly, most of the expenses of those living this zombie life spend money not on being cured but being tested and using off-label drugs (drugs that are used for a purpose other than that for which they have been certified) in an endless search for partial, temporary relief.

Marly Silverman, a patient activist and director of PANDORA, a coalition of Chronic Fatigue Syndrome groups, said that had the Supreme Court decided otherwise, patients with chronic disease would have been forced back to uninsurable limbo.

For now, the apparent saving of Obamacare is a mercy for all the lifetime diseases. But it has a particular meaning for CFS sufferers because there is no easy diagnosis of the disease, and the patients often look quite well. It is a cruel irony that many CFS patients do not show signs ofbeing sick, so they are accused of sloth and malingering when they are as sick as can be.

Which is where the power of one comes in.

Women tell stories about devoted husbands — maybe the most famous being author Laura Hillenbrand’s. Also there are loyal wives who take up the burden, as in the case of Courtney Miller of Nevada, who is crusading for recognition for the disease that afflicts her husband Robert.

In other cases, lovers and spouses have taken the exits, leaving the prostrate to the additional suffering of loneliness and often poverty. Some sufferers are among the homeless. There many cases of victims living in cars and getting scant recognition or help from either the SocialSecurity Administration or doctors who take Medicaid patients.

John Roberts has become an important person in some very sad lives. For now he is the “one.”— For the Hearst-New York Times Syndicate

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